Back from the dr. NOT GOOD NEWS please help me here.....

Hi there

I'm so sorry your husband and you are going through this.  Can doctor do radiation first?  I started with radiation then surgery and then chemo.   Or did they say they will start with chemo first?   The was just begun his journey so there are options.   I do not agree that they held this news from your husband.   He deserves to know what is happening and the two of you can support each other.  

gizzyluv said:

I think....

I think the reason he is doing the surgery first is because the tumor is SO large it's close to blocking his colon completely. I thought the same thing about the radiation (not until after we left the office, of course) but Jason's dr. is a highly renowned colorectal cancer surgeon, so I do trust what he believes should be done first. I'm still in disbelief....it's like I'm in a bad dream. What stage were you in & had it spread?

Me

At first I was Stage 3 but had recurrence with mets to multiple locations so now I am stage Iv 

 

 

Hang in there

This is all a bit odd to me.  First of all, why would the doc only share this extensive info with you?  Is there some good reason to not let your husband in on how sick he is? 

I know you mentioned that you have no insurance, but that should not keep you from getting the best care possible for your husband.  I too was without insurance when diagnosed and had surgery.  You just have to be upfront about your financial situation with docs and hospial.  There are grants and financial aid available. 

Under other circumstances I would say you need a second opinion, but I am not sure you have time for that now.  Gettig Jason thru a sucessful surgery is the key now.  It may be that the tumor has moved into the abdomin and is over shadowing the stomach but not into it.  Don't let the 2 year prognosis weigh on your mind.  Many here have been given far less time at diagnosis, but with surgery and followup treatments have continued to live and thrive many many years.

Prayers for you and Jason that all will turn out better than expected with the surgery.

Marie who loves kitties

 

jen2012 said:

I'm sorry Kris.  I know how

I'm sorry Kris.  I know how much this sucks.  My husband was diagnosed stage 4 in August and we got the same 2 yr prognosis.  It seems drs say that for all stage 4 patients regardless of why they are stage 4.  As you can see here many stage 4 patients are around much longer than 2 yrs.  That doesn't mean that your husband or mine will be - we can only hope and pray.   This is so hard, but I can tell you that after 4 or 5 months, I found there were finally days that I didn't cry.  The first few months and especially the first month, I cried often and felt sick to my stomach all the time.   One of the things I hate about cancer is it feels like it steals your sense of the future. Everyone says one day at a time - that has been difficult for us as planners!  We always thought and talked about the future and now we don't.   Well we still do but it feels sad.  

Others will come along and give you advice about treatments, etc. I just wanted to let you know I understand what you are going through.  Hang in there and remember to breathe!  

P.S.  I agree with Vicki - the doctor should have asked you both together how much info you wanted and not laid it on you.  That's not fair.

I'm sorry.
I know how hard this is and overwhelming. In 2 years time, there will be clinical trials that he could try after some surgery and chemo.
It will take a while for this to sink in, but it will get a little easier when you have more information after surgery.
Lean on your God, it WILL help you get through day by day. Do you have supportive people, too, in your community, and church?
I think I remember you said you were in TN. There is a research center (Sarah Canon), that may be a good place down the road to check out clinical trials. I think it is in Nashville. Anyway, don't worry about that now. Just want you to know there are people working on new treatments. Go with the plan, settle in, and keep learning. There will be highs and lows.
Praying for you.....adding you both to my prayer list.
xoxoxo

Me again

Dear Kris,

I just read your early AM post about Jason.  Did you or he let the surgeon know about the vomiting?  If so, did he tell you what to do in case it occurs again?

Based on the size of the tumor, I hope he told you that an immediate trip to the ER would be appropriate.  As others posted on that other thread, those symptoms can indicate a total blockage...either due to position or growth of the tumor. 

I just hate it that the doctor left it to you to tell Jason about the CT results and prognosis.  It left you with a terrible burden, which you seem to have handled well.

Praying that the surgeons hands be guided for best outcome with the surgery.

Marie who loves kitties

gizzyluv said:

Thank you

I will feel a lot better if the surgery is successful, but there is that word...."IF" the surgery is successful. The dr. told me that he may open Jason up & see that there is nothing he can do. I completely believe in the power of prayer, so that's what I've been doing (a lot) is praying that the lord will place his healing hands on Jason & shrink the tumors, & rid his body of this terrible disease. It's all in his hands now....Thank you for adding us to your prayer list, it means a lot. Take care & God Bless, Kris

No more ifs

Take the IF our of your vocabulary. 

Use When and after and in the future just like you have been doing these last five years of marriage. 

We, all of us, know what the ifs could be, its not like we're hiding our heads in the sand, but we need to face this with nothing but positives. 

Face one step at a time, don't rush ahead. 

When Jason has the surgery, then you think about what they found. When they stage the cancer, then you face what comes next. Its all so overwhelming, but if you worry about what 'might' happen, your journey will be all the more harder. 

I am weeping for you and Jason. I am weeping for myself and everyone else who is fighting this battle. 

And I'd be having a word with the Doctor, who has no right to talk to you abuot the seriousness of Jasons condition and not him.  

You are both in my thoughts and prayers. 

2 words: SECOND OPINION!!!

WOW!  This guy may be a great surgeon, but it sounds like his bedside manner STINKS!!!

I would question all of it...and, as others have said, there are options to help with the costs....

 

That all said, if you read my page....I was told that my cancer was 'everywhere' in my abdomen and that, at best, I had 6 months to live.  I should "get my affairs in order...yada yada yada...."....

Oh, that piece of news was delivered the day after Thanksgiving, 2004....(8 years)  

At 6 months, I was over all treatment for the rectal cancer, and on to the breast cancer that was found during a PET scan for the rectal cancer....Now, I just was 'graduated' to yearly visits to my oncologist...and only because she likes to see her successes....

 

Everyone is different....statistics are guidelines....I'm not saying it is not serious, but you have just started your journey...and there are many folks, both here and elsewhere, who are living with stage IV colon cancer...(I know some...I still mentor many)...

 

The most important thing is to be comfortable with your husband's treatment team.  I must admit, there were some things that at first the doctor was hesitant to tell me...but I squared that away...I worked in a hospital, my beau is a doctor...I had heard it all...so I wanted to hear it all...

BIG hugs, Kathi

Questionable Ethics Questionable Surgeon

I am so sorry you and your husband are facing this, but at least you're facing it together. 

In regard to this post and your surgeon, the best thing I can say is SECOND OPINION, SECOND OPINION, for a couple of reasons. 

In my opinion, your surgeon's choice to speak to you while keeping your husband in the dark is unethical, at the very least.  In addition, by sharing your husband's private medical information with you while keeping your husband ignorant of the discussion may may have been a violation of the law. 

Regardless of medical ethics or legal standards, your surgeon violated your husband's trust which to me would call into question his qualifcations to operate, on me at least. 

Something you should be aware of in regard to the "averages."  At least one website that posted averages added a "disclaimer of sorts," stating that the survival statistics for many types of cancers were compiled some time ago, making them a bit dated.  In addition, the website editors wrote that patients should keep in mind that five-year survival statistics take at least five years to compile, meaning by the time the statistics are published at least five years have passed. 

To put the "datedness" of cancer survival statistics in perspective, as I understand it for colon cancer, in 2000, there were at most one or two drugs used to treat the disease.  Today 12 years later there are at least a dozen with two just approved in 2012.  Therefore, given the efficacy of these drugs, which admittedly isn't perfect, and other treatments used today, if a five-year survival study ended in 2012, I'm sure you can see how those statistics would result in worse survival rates than are actually occurring.  Please understand these are conclusions I have reached after reading about survival statistics and studying how statistis in general are compiled.  In addition, your husband is an individual and statistics are compiled using thousands and indicate general trends and are therefore largely not applicable to any one individual. 

Lastly, please check your previous post as I replied with some information regarding SSDI that you might find helpful.  Furthermore, I strongly urge you to look into the insurance exchanges that are a part of the Affordable Care Act (Obamacare) wihile pursuing your Medicaid coverage as well. 

Again, I am sorry you're facing this horrible disease, but remember you're facing it together. 

Fair winds and following seas to you and your husband and remember the people on this board are here to support you.

 Rick